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Thursday, 1 December 2016

Welcome to wonderful

Yesterday saw the official launch of the Mencap 'FamilyHub' – A new online community for parents and carers of children (young and old and yet to be born!) with a learning disability. This will be a great resource for people to exchange ideas, share experiences and offer support to those in need. It's not always convenient to visit a local group for support and many people are afraid to ask questions face-to-face for fear of sounding silly or selfish or even being judged. An online forum is the perfect place to ask such questions at a time and place that suits you.

As a Family Ambassador for Mencap I am very proud to be a part of this community and as such was asked to write the first post for the forum. I actually found parts of it difficult and distressing to write as I had to take myself back to a time when my ignorance of Down's syndrome knew no bounds but I want other parents who may be struggling to come to terms with a diagnosis to understand that they are not alone and however bad they feel the journey will get easier.

I have included the post below however I urge you (if you are a parent or carer of someone with a learning disability) to read it in the forum and sign up by clicking here – you never know you might just have that burning question answered or be able to help someone else.

Welcome to wonderful – my story as Rosie's dad

I’m proud to be a family ambassador for Mencap and as such was asked if I would write a post aimed at other parents who may be in a similar situation to the one I found myself in when my daughter was diagnosed with Down’s syndrome. Hopefully the following post can offer some positivity or at least reassurance that no matter how afraid or confused a new parent find themselves, they are not alone.

I would assume there are many different reasons that you may find yourself here reading this post, a fear of the unknown, a need for reassurance perhaps? Whatever your reasons I can almost guarantee you are not unique or alone with your current situation.

I’m a Dad of three – my two sons, Harry and Joe, and their younger sister Rosie who happens to have a learning disability – a SEVERE learning disability if you go by the often negative words used to describe Down’s syndrome (DS).

Rosie is 5 ½ years old and has not only opened up my eyes to a wonderful new place (I was once afraid of) but also everyone else’s around her, to see beyond the myths associated with DS that I once believed to be reality.

My wife Karen and I knew pre-natally that our daughter would have DS and so my story began before I’d even set eyes upon my baby girl.

I remember the emotions well, deep shock and anxiety and a complete fear of the unknown. Some of my feelings which I have kept locked-up (until-now) were not only irrational but completely selfish, even disturbing to me at times. Perhaps they say more about the person I was then or perhaps (more likely) they are a perfectly normal part of the rationalising process the mind takes when trying to digest such life-changing news. Whatever the reasons, they were real and I’m sharing them here now to maybe reach that person who is equally disturbed by their own similar feelings.

It isn’t easy for me to write these things down let alone share them publicly because really the ‘pre-Rosie’ me is referring to Rosie, her friends and anyone else I’ve ever met or now have the pleasure of knowing who has DS. I feel ashamed I ever had such ignorance, but I am learning not to beat myself up about it as it’s a life-lesson that has enlightened me in such a positive way.

My ignorance of DS knew no limits back then and I remember thinking thoughts like, I hope she doesn’t look really ‘Downs’. I searched hundreds of pictures trying to find reassurance that ‘they’ don’t all look the same and that ‘they’ can look beautiful too. I couldn’t have been more selfish in my thoughts and this continued certainly for the first few weeks post-diagnosis.

Finding out pre-natally gave my wife and I the time to get used to the idea that our daughter has special needs. As a result I can’t talk from any experience of a postnatal diagnosis but I would imagine the shock is similar – it’s just you may be taking time to adjust and learn in the first few weeks after the birth rather than before.

At some point the time will come where you see past the diagnosis and see the person – the beautiful, unique child that looks more like you as parents than someone else with DS.

For me the shift in change began a few hours after Rosie was born, she wasn’t just the ‘Downs baby’ my wife was carrying but my daughter who happened to have a little extra (chromosome in this case!).

Many of those selfish fears and concerns turned to feelings of protection for Rosie. I won’t lie, things hadn’t changed so dramatically that I was in full ‘moving on’ mode but it was a solid step forward towards seeing beyond the syndrome.

However, even after all these feelings of overwhelming love for my new baby I had pangs of guilt as I realised they still couldn’t totally overrule the fears. It was at this point that I knew this process of acceptance was going to take me some time.

I decided I would clear my head and re-jig my thoughts by allowing myself to enjoy the wonderful life that lay there right in front of me, a life that needed and wanted me – take it hour-by-hour I thought, at least for the time being because consuming myself with anxiety really wasn’t the answer. I convinced myself I was on the right track at least by taking steps – yes they were tiny but at least they were forward ones and so stopped beating myself up that I was some kind of terrible Dad.

Things really changed significantly for me six months after Rosie’s birth. In September 2011 Rosie had to endure over seven hours of open heart surgery which as you can imagine was a very traumatic time for the whole family. It wasn’t a bolt out of the blue, it was something we knew would be on the cards shortly after her birth but nothing really prepares you for the moment.

As I sat by her bedside in the intensive care unit at Alder Hey Children’s Hospital I held her tiny hand and gazed at her in total awe of the strength and bravery she had shown – it then dawned on me that for the whole time in hospital I hadn’t thought once about the fact she has Down’s syndrome, it had, at this point become totally insignificant for the first time since we’d had the diagnosis. All I wanted was to get my baby girl home safely.

Even now though, over six years on from the diagnosis I still have fears for Rosie’s future, I worry about my two son’s too though if I’m honest – but that’s just being a parent I guess?!

When time permits I write on my blog 'The Future's Rosie' which covers all aspects of her life and I recall one particular post which covered a list of ‘What ifs…?’ some of which may sound familiar:

What if I don't ever get used to the inevitable stares from the ignorant corners of society?

What if Rosie can't ever walk?

What if Rosie attends school and she's the only person in her class not to get a party invite?

What if she's bullied and picked on by her peers and she thinks they are her friends?

What if name calling leaves a lasting mental scar on her and/or her brothers?

What if she becomes too dependent when she's older?

What if I become so protective it affects her ability to become independent?

What if I can't do enough to help her reach her full potential?

What if I can't afford the extra classes or development tools she could really use to her benefit?

What if...and the list goes on.

Thankfully the majority haven’t materialised and those that have (the odd stare now and then) have been so minor they’re as good as insignificant.

Rosie has been a breath of fresh air to our family and the highs (so far) have most definitely outweighed any lows.

She’s in a mainstream school now, has lots of friends both with and without DS and has so many people around her who love and care for her and want to see her reach her full potential as much as we do.

Her brothers both dote on her as they would any younger sister and have shown nothing but pure affection and pride in her – I have yet to see them struggling or finding life too restricting – as is often the worry for siblings of a child with a disability.

Whilst there are still society stigmas associated with learning disabilities, charities like Mencap have really made a difference and are pathing the way for more and more people to reach their ambitions and receive the support they need to achieve these goals. We all deserve the best chance at life no matter what our situation and my daughter who happens to have DS is no different in my opinion. She deserves to be given the chances she needs and she will.

So, if you are a parent struggling with a diagnosis I’d say remember that for many, the process of making sense and coming to terms with things can be a marathon not a sprint. No matter how frightened, confused or worried you are you can guarantee you’re not alone and these feelings are totally natural. I’m almost sure every one of us has been through them, and yes, whilst we’re all different and will manage the ‘coming to terms with’ process differently, it’s important to know it is a process and it will get easier.

If it takes you longer than others it doesn’t make you weaker or any less a person it simply makes you human.

5 comments:

I commend you for being so honest. Rosie is such a lovely little girl. I see her in my memories almost every day and I just smile. I believe that if you are given a child with special needs you are blessed, for they show us more than we would ever know. God Bless

As a mum of James (12), we received the diagnosis of DS post natal. I remember it like yesterday, after he was born he was whisked away to special care. After I'd been stitched I was taken to see my bundle of joy. It was then that it was mentioned but was told he'd have to have bloods taken in the morning. 3 days later it was confirmed.

The thoughts that went through my head make me cringe and I'm disgusted with myself for even thinking them.....my parents had spent a fortune on a travel system for their first grandchild we didn't deserve it....Had I done something wrong when pregnant? Was I getting my comeuppance as I was told by an in law a few years previously that I must have been an evil person in a former life? Then maternal instinct kicked in, he's my son first, so I had to look after him. (Hubby didn't cope too well and didn't visit us in hospital for a few days).How was I going to tell people? More importantly how would I tell my parents? Silly thoughts now but at the time they were so important.Shouldn't have worried, I managed to not tell my parents until he was a week old (didn't want them to worry about me), as my dad was elderly. So a week after James was born they came to visit (they were at the hospital while I had my c-section) my dad had gone for a ciggy, my mum was sat holding James and I blurted it all out. My mum thought I was joking (he didn't look like he had DS according to her) I then made her promise not to tell my dad until they got home as I worried about him driving!

Anyway 12 years on a magical roller-coaster and I would not change a single thing. The friends we have made on this journey have enriched our lives.I still worry about the future but I'm definitely enjoying every day with my son.

Father of a new born with DS..I find your blog very comforting and giving me a good perception to take the new life forward . however my wife hasn't come into terms with this, she is blaming herself, the hospital for no proper diagnosi and breaking down at every instant. She is more scared of what future holds for our son and how society will look at him. I have been reading up lot of blogs and articles to soothen this out and show only positives and I hope she snaps out of it.

Hi Ashok, thank you for your comment and for taking the time to message. Its perfectly normal to go through a period of distress and almost 'mourning' the son you thought you would have. I'm sure things will get easier for your wife especially as you seem a very supportive husband and father. There is a great (and perfectly timed) article on the Guardian written by a friend of mine, Caroline, which I think will be good for your wife to read as it is a brutally honest account of how she came to terms with her own sons diagnosis. You can read it in the link below. I'd like to wish you all the very best for 2017 and hope things get easier quickly for you. Remember it's a marathon and not a sprint for many!https://www.theguardian.com/lifeandstyle/2016/dec/31/my-sons-downs-syndrome-does-not-define-him?CMP=twt_gu